Welcome To The Hermit's Desk

Jan. 30th, 2017

Jan. 30th, 2017

I think, as I told Jesse last night, that I am beginning to get used to the lupus fatigue. The level 1, always there because Hey, Lupus! fatigue. Six months into treatment - six seemingly foreeever long months into treatment - I am learning how to identify and work with some of the fatigue.

At least the base level, which is a start. A woman wrote a wonderful piece describing five levels of lupus fatigue - each of which build up on each other. It's not like you experience just the fifth kind of tiredness - you experience 1,2,3,4 AND 5.

The Five Levels of Lupus Fatigue It's a very well written piece on what it feels like to live in the world of lupus fatigue. And the first one, which she calls "Daily Exhaustion", is always present. It is the basic sense of tiredness that exists all day, every day, no matter how well you sleep, eat, or hydrate. I think this is probably common to a number of chronic illnesses.

It's knowing that I can sleep for 12 hours and yet, 6 hours later, could comfortably go down for a 2 hour nap. It's knowing that an hour and a half run of errands will grind me down to needing an hour of straight rest afterwards. It's knowing that my window of opportunities to do things exist in very rigid timescales - and that those timescales can shift at any time, without warning.

That is there, all the time. And I'm finally, finally starting to get a handle on it.

Okay, I'm starting to get a handle on it when I'm not in the middle of a flare, which I've been in for, oh, about six months. This last week out of the hospital is the first time in six months that my symptoms have been fairly non-symptomatic. No nausea. No aches or pains. No real headaches. I am actually sleeping.

Adjusting my meds, getting the anemia and hydration back into proper places, and for the first time in half a year, I feel...human. I feel human and I've felt human for more than 3 days in a row.

Human...and tired. Tired in a way that I will always be tired. It's the kind of tired that I now know better than to try and fight. It's the kind of tired that I am learning how to plan around. Going out to shop? Do it early enough in the day where I can take a short nap without it messing with my bedtime. Scooping out litterboxes? Bend at the knees so that I don't stress my legs too much, which would make me even more tired. 8 PM hits and suddenly I'm so exhausted I can barely talk? Make sure that I put together my night meds first thing in the morning, so that I don't HAVE to drag myself into double and triple checking that I put the right night meds together and I'm not od'ing on my blood pressure medication.

Things like that. It's not yet perfect - there are days when my naps interfere with my bedtime, or when I have to ask Jesse to assemble my night meds for me, or where the litterboxes wait one more day to get scooped. But overall, when not being clobbered by flare-symptoms, I am finding an acceptance towards the amount of energy that I have.

It's my first instinct to fight this. To push through the fatigue like one pushes through a sprained ankle. The difference is the ankle will heal. The fatigue will not. It requires a different approach, just like you said, Cinema.

I've had the best run of days this week since I was diagnosed in August of last year. Suddenly, all of these things that you guys have been telling me are starting to click.

I'm not fool enough to believe that the next flare won't bring with it the same feelings of rage and self-pity that I've been drowning in. But suddenly there's hope - and with it, a knowledge that it does get better. It'll inevitably get worse.

But then it'll inevitably get better, too.

Even though I'm tired. Even though I'm currently debating on whether or not I have the spoons to take advantage of the 60 degree day we're having and go to the park (which would use up all spoons today and at least a couple of tomorrow's spoons, too). Even though I know if I go out, I'll go back down for a nap.